www.patientclientcouncil.hscni.net
Patient and Client Council
A hidden condition
Ten people living with
fibromyalgia tell their story
June 2016
Your voice in health and social care
Table of Contents
Foreword................................................................................................................................... 2
Introduction............................................................................................................................. 3
What is fibromyalgia?......................................................................................................................... 3
What are the symptoms?.................................................................................................................. 3
What is the cause?............................................................................................................................... 4
Prevalence of fibromyalgia.............................................................................................................. 4
Diagnosis................................................................................................................................................ 4
Treatment............................................................................................................................................... 5
Social impacts....................................................................................................................................... 7
Service provision in Northern Ireland.......................................................................................... 7
Aims and objectives........................................................................................................................... 7
Patient stories.......................................................................................................................... 9
Janet’s story.........................................................................................................................................10
Carol’s story.........................................................................................................................................12
Mary’s story..........................................................................................................................................14
Olive’s story..........................................................................................................................................17
John’s story..........................................................................................................................................20
Laura’s story.........................................................................................................................................23
Kelly’s story..........................................................................................................................................25
Paul’s story...........................................................................................................................................27
Karen’s story........................................................................................................................................29
Jessica’s story......................................................................................................................................31
Key issues and recommendations...................................................................................... 34
Key issues.............................................................................................................................................34
Recommendations............................................................................................................................34
Appendix 1: Service provision for fibromyalgia in NI........................................................... 35
Appendix 2: Glossary of clinical terminology.................................................................. 37
Appendix 3: References........................................................................................................ 39
A hidden condition | Ten people living with fibromyalgia tell their story
1
Foreword
Dear Reader,
I am delighted to have been asked to contribute the Foreword to this publication by the Patient
and Client Council. Over the past three years their work with those who live with long term pain, in
particular ‘The Painful Truth’ project, has made considerable progress in engaging people and their
families in highlighting the burden of pain on their lives and their concerns about the provision of
adequate health and social care services to those who shape and deliver them.
One group of people who were involved in the project, and who continue to contribute to the
conversation about service provision through the Chronic Pain Forum of the Health and Social Care
Board, are those with fibromyalgia.
This condition is so much more than just widespread pain, as this publication attests. The stories of
the contributors tell of the impact that the condition has on their health, family life, work and hopes.
Most telling, is their frustration with the time taken to get a diagnosis, the lack of understanding
of the condition on the part of many healthcare professionals and society, and the lack of effective
medication and support for self-management.
Please take time to read these stories and appreciate the perpetual difficulties of the lives of their
authors; they are to be commended for their willingness to share them. If fibromyalgia seems a
puzzling disease, the introduction should clarify matters for the lay and professional reader alike.
I have been privileged to be part of the Patient and Client Council’s work with this group of people,
witnessing the efforts that they make to attend meetings, engage in email conversations and direct
our deliberations. I know that the Patient and Client Council will continue this work to ensure that
those with fibromyalgia are not disadvantaged, forgotten or ‘hidden’.
Dr Pamela F Bell
Chair, The Pain Alliance of Northern Ireland
2
A hidden condition | Ten people living with fibromyalgia tell their story
Introduction
What is fibromyalgia?
Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain
all over the body.1 The pain does not reflect any specific identified problems with joints, muscles or
bones.2
It can impact every part of a person’s life. Relationships with spouses/ partners, children and friends
can be affected and people living with the condition can experience loneliness, isolation, self-doubt
and guilt.3 It has been shown to have a significant cost in terms of absence and loss of productivity
for employers.4 It is also associated with higher risk of death through suicide or accidents.5
What are the symptoms?
People with the condition report how they ache all over and experience profound fatigue. Their
muscles may feel like they have been pulled or overworked. The pain tends to be felt as diffuse
aching or burning. It may be worse at certain times and can change location, usually becoming
more severe in parts of the body that are used the most. In terms of fatigue this can range from
feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel
drained of all energy as if someone just “pulled the plug”.6 Other symptoms include sleep disorders,
problems with cognitive functioning, irritable bowel syndrome, headaches/ migraines, tingling
and numbness, anxiety and depression and problems with mental processes such as memory and
concentration (sometimes referred to as “fibro-fog”).1,7 This is an overview of the main symptoms as
many other symptoms are associated with the condition (between 60 – 100 different symptoms).8,9
Figure 1.1 highlights some symptoms of fibromyalgia.
Figure 1.1: Example of some symptoms of fibromyalgia
A hidden condition | Ten people living with fibromyalgia tell their story
3
Symptoms can vary for different individuals and are generally classed as mild, moderate and severe
fibromyalgia.10 People with mild to moderate cases of fibromyalgia are usually able to live a normal
life given the right treatment. On the other hand, if symptoms are severe people may not be able to
hold down a permanent job or enjoy a full social life.6
There are no outward signs of the condition, so many fibromyalgia sufferers go unnoticed. This
makes it hard for outsiders to understand how bad someone is feeling, which can be depressing or
frustrating for those with the condition.2
What is the cause?
There is no known cause of fibromyalgia; however it is suggested that a number of factors are
associated with its development, such as a particular physical or emotionally stressful or traumatic
event.1,11-13 This can include events such as; a fall, car accident, viral infection, childbirth, operation or
emotional event.6 For others it can occur spontaneously.14 Some studies have noted that there may
be a genetic component to fibromyalgia and it could therefore run in families.15 Other research is
on-going seeking to understand other factors which may be involved, including problems with how
the central nervous system processes pain.16
The condition can occur in isolation, but more often it co-occurs with other conditions now being
shown to have a similar underlying physiological process (e.g. irritable bowel syndrome, interstitial
cystitis, and tension headache) or as an additional disorder in individuals with diseases characterised
by on-going peripheral damage or inflammation (e.g. autoimmune disorders and osteoarthritis).17
Prevalence of fibromyalgia
Fibromyalgia is a common condition and anyone can develop it.18 However, it can be difficult
to diagnose, which makes it more problematic to get a true reflection of how many people are
affected.1
Epidemiological studies report a fibromyalgia prevalence of between 2 and 7% (roughly affecting 1
in every 25) in most nations.19 It is reported that fibromyalgia accounts for 2% of patients seen in a
general practice setting and 5% of those attending a general medical outpatient clinic.18 It has also
been demonstrated that a diagnosis of fibromyalgia is more common in Northern Ireland than in
other areas of the UK.20
The condition typically develops between the ages of 30 and 50, but can occur in people of any age,
including children and the elderly.1 It has also been found that fibromyalgia is more prevalent in
females than males (3.4% versus 0.5%).21
Diagnosis
Diagnosis is very important for people living with fibromyalgia so that they have an understanding
of their pain and can be subsequently treated and/ or referred to other services to help them
manage their condition. A definitive diagnosis may reassure patients that their symptoms do not
reflect another underlying condition. It can allow them to feel more in control, which thereby fosters
acceptance and allows symptoms to be appropriately treated. Simply “being believed” may have a
significant influence on patient health and well-being.20
4
A hidden condition | Ten people living with fibromyalgia tell their story
However, diagnosing the condition can be difficult and there is no specific test that can be used to
diagnose it as it does not show up on blood tests, x-rays or scans.2 Until recently the diagnosis of
fibromyalgia was based on a ‘tender point examination’ and people with the condition are often
very tender on gentle pressure in these areas.22
The most recent classification criteria for fibromyalgia recommend that, in addition to pain, health
care professionals also include fatigue, sleeplessness and cognitive problems (fibro fog) when
making a diagnosis of fibromyalgia. The full symptom profile of patients is also included in the
diagnostic criteria.23
The symptoms of fibromyalgia can vary and can be similar to those of several other conditions.
However, fibromyalgia has unique clinical characteristics and GPs can make a diagnosis based
on the disorder’s clinical presentation. Fibromyalgia is not a disorder of exclusion.24 Fibromyalgia
symptoms can mimic other conditions (e.g. hypothyroidism and inflammatory rheumatic
diseases, myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS), rheumatoid arthritis,
osteoarthritis, systemic lupus erythematosus, spinal stenosis, neuropathies, sleep disorders such as
sleep apnea). It is important that these conditions are identified if present. The presence of these
conditions does not preclude a diagnosis of fibromyalgia.24
As is often the case for those with fibromyalgia, people in Northern Ireland have reported that
their fibromyalgia diagnosis has taken too long and that some GPs do not have the knowledge or
experience to quickly diagnose the condition.25
Treatment
There is no cure for fibromyalgia; however there is evidence that treatment can ease some of the
symptoms and improve quality of life.1 At present, learning to manage the condition seems to be
the most successful way of dealing with fibromyalgia.6
A number of international guidelines have also emphasised the importance of physical activity in
the management of fibromyalgia26-28 and there is some evidence of improvement in quality of life
with physical activity29,30 but people with fibromyalgia report that exercise can often exacerbate
their symptoms.31 One of the major challenges in managing fibromyalgia is striking a balance
between gently increasing physical activity and controlling symptoms.
Patients require support through therapies in a coordinated way to ensure symptoms are controlled
as much as possible to enable them to manage their lives as well as possible.
Fibromyalgia has numerous symptoms, meaning no single treatment will work for all. Treatments
that work for some people will not necessarily work for others.1 Due to the complexity of
fibromyalgia it requires a multidisciplinary approach to treatment based around patient selfmanagement.32 In general, treatments for fibromyalgia tend to be a combination of:
►► Talking therapies;
►► Lifestyle changes such as gently increasing physical activity; and/or
►► Medication.
A hidden condition | Ten people living with fibromyalgia tell their story
5
Talking therapies
Talking therapies such as cognitive behavioural therapy (CBT) and counselling can help fibromyalgia
sufferers cope with changes in their life and help them manage and come to terms with the changes
they have to implement in their lifestyle.33
Lifestyle changes
It has been found that the best way to cope with fibromyalgia is to use a number of techniques that
ease the symptoms as much as possible, as shown in Figure 1.2 below.
Figure 1.2: Suggested techniques to cope with fibromyalgia
People with fibromyalgia will often use complementary and alternative medicines, but further
evidence-based trials using complementary treatments are required to determine the true scientific
value of these.32, 34
People with fibromyalgia can have good and bad days. Whilst it can be tempting for individuals to
overdo it on a good day, it is important that they pace themselves and rest to avoid exacerbating
the symptoms in forthcoming days.6
Medication
A variety of medications can be used to treat fibromyalgia, and this generally benefits half of those
with the condition. Medicines that can alleviate some of the symptoms can include:
►► Painkillers, such as paracetamol, codeine or tramadol to alleviate the pain;
►► Neuromodulatory drugs that work on the nervous system to change how pain is processed in
the brain and spine. Whilst developed for other purposes, they have been shown to help many
people with fibromyalgia;
►► Amitriptyline and nortriptyline taken in the evening can help sleep and reduce pain. These are
also used to treat depression, but the doses effective in fibromyalgia are usually much lower;
and
►► Other medications used in fibromyalgia include gabapentin, pregabalin, fluoxetine and
duloxetine.2
6
A hidden condition | Ten people living with fibromyalgia tell their story
Social impacts
Depending upon the severity of fibromyalgia, those who have it can experience difficulties in
performing normal activities of daily living.
Strenuous activities such as walking, climbing stairs and shopping can be challenging for patients.
However, it is important that, when able, people with fibromyalgia try to do even a little physical
activity. Some patients have found it beneficial to use a heart rate monitor to control their exercise
intensity.30 This way patients can engage in physical activity in a controlled way that will not
exacerbate their symptoms.
Some people with fibromyalgia may have to reduce the amount of work they do and some may
have to give up work altogether, which can cause a strain both mentally and financially. People with
fibromyalgia can feel disempowered and unable to support themselves and their family. Therefore
if they are unable to work, that puts a large monetary strain on them.
Some fibromyalgia sufferers are able to maintain employment. However, whilst they can maintain
their employment many find their symptoms compromise their ability to be productive due
to frequent absences and reduced work hours,19 as well as draining them of energy needed to
participate in family and social life.
Service provision in Northern Ireland
As part of the background research for this project, contact was made with the five different Health
and Social Care Trusts, the Health and Social Care Board and the Department of Health, Social
Services and Public Safety (DHSSPS). As part of these enquires, we asked each Trust to provide
a list of services which were available in their area. We also asked the DHSSPS for a copy of the
departmental policy and to clarify if there is a defined care pathway for this condition. Information
was also requested from the HSC Board around what services have been commissioned and to
detail any plans for service development or changes in the future.
Overall, the responses highlight that there are no specific services available for patients with
fibromyalgia in Northern Ireland. Correspondence indicated that patients presenting to their GP
are referred for further investigation and a range of hospital specialties including rheumatology,
neurology, psychiatry, gastroenterology, endocrinology and primary care (GPs). A summary of the
responses received are provided in Appendix 1.
Aims and objectives
This project was developed with the assistance of people living with fibromyalgia who wished to
highlight issues relating to their condition. A steering group was subsequently established with
a view to reporting and raising awareness of the condition. The project aim is to understand the
experience of a small number of people living with fibromyalgia. It also seeks to raise awareness of
people’s experiences in relation to:
►► Getting a diagnosis;
►► Living with the condition; and
A hidden condition | Ten people living with fibromyalgia tell their story
7
►► Experience of Health and Social Care in Northern Ireland.
Through listening to people’s experiences, this report seeks to provide an understanding of what
the challenges are for people living with fibromyalgia and highlight potential gaps in their health
and social care services.
Note to reader
The stories recorded in this document outline what people told us in their own words. However, the
names used in this report are not the actual names of those who we spoke to. The project steering
group guided us in identifying people who wished to tell their story.
When people discuss the ‘NHS’ throughout this document, they are referring to the Health and
Social Care system in Northern Ireland.
8
A hidden condition | Ten people living with fibromyalgia tell their story
Patient
stories
Janet’s story
It all started when I had a car accident back
in 1997, after which I had terrible pains in my
legs and lower back trouble. I have never fully
recovered since the accident.
(Female, 35-44 years old)
I lived alone for many years and was very
independent. I loved gardening, a little bit
of DIY and was generally very active. After
the accident, I had constant pains in my legs
and lower back and frequently visited my GP
where I was referred to different physiotherapy
programmes and pain clinics, none of which
improved my situation. This was a worrying
time as I never felt any closer to getting a
diagnosis, wondering what the diagnosis
would be and, all the while, my health was
deteriorating. As each year passed I was able
to do less and less. I had been working up until
2001 and had periods of sickness with lower
back pain and pains in my legs until, eventually,
I just couldn’t sit or stand for the full eight hours.
I tried cutting my hours but it didn’t work and I
have been out of employment since then.
I had never heard of
fibromyalgia until I was
diagnosed...I wasn’t given
any information on how to
manage the condition.
My biggest breakthrough was, when after eight
years of failed treatments and no improvements
in my health, I attended the pain clinic where
the doctor thought I had inflammatory
arthritis and, as a result, I was referred to a
rheumatologist.
Whilst waiting for my appointment with
the rheumatologist I made an appointment
with a private rheumatologist who gave me
an injection in my hip. I later received an
appointment with the same consultant through
the NHS where he then did an MRI scan and,
within three weeks, I was called back to the
10
hospital and diagnosed with fibromyalgia.
I had never heard of fibromyalgia until I was
diagnosed, I had to look it up on the internet
and find out as much information as I could
about it as I was not given any information on
how to manage the condition.
Over the years my condition has deteriorated
and since my diagnosis in 2005, it has got
dramatically worse. I depend a lot more on
people, especially my sister who helps me
around the house and garden, as well as walking
the dog. I lived quite a distance away from my
sister and my parents and found I was travelling
home more frequently for moral and emotional
support. After a number of years, I moved
back home within two miles of my mum, dad
and sister. Even though I still live on my own,
I wouldn’t describe my life as independent as I
completely rely on my family. I do not get any
support at home other than from my family and
I also have my support group which provides
me with a social aspect to my illness. I find
having someone who really understands the
illness can help you when you are at your lowest
point. Professionals will advise that exercise is
key but sometimes this is just not possible when
you have hit a low or your energy is just nonexistent. Sometimes all you need is someone
who knows you and knows how you are feeling
and what you are capable of to be there for you
and help you through the rough times.
I get benefits to help me out financially as I can’t
work but it’s a difficult process and I had to go
to a solicitor who specialises in filling in forms
and they helped me with the forms to access
benefits. As fibromyalgia is an unpredictable
illness it is difficult to record on a form how you
A hidden condition | Ten people living with fibromyalgia tell their story
are feeling from day to day, making it more
difficult to get benefits. This added to my worry
as I was no longer in full time employment and
I wanted to maintain my independence but had
very little money to live on.
I currently do not receive any treatment
for fibromyalgia other than painkillers,
amitriptyline, propranolol and venlafaxine. I
usually visit the GP every three months to review
my situation and my medication will either be
increased or decreased depending on what I
need. My GP has been very good the whole way
through my journey. He stands out as being
the most knowledgeable about my condition
and has played a key part in my care since 1997
and, particularly after diagnosis, he really helped
me through it and explained things to me. My
experience with other professionals I have been
referred to varies, some may not have heard of
the illness, others don’t take it seriously or think
it’s all in my head. I would say I got the most
help and support about my illness from my local
GP practice.
I would say I got the most help
and support about my illness
from my local GP practice. My
GP was willing to refer me to
anything he felt would help my
chances of getting a diagnosis,
although I had to wait for the
referrals.
My GP was willing to refer me to anything he felt
would help my chances of getting a diagnosis,
although I had to wait for the referrals. For
example, it took six to eight weeks to be referred
onto physiotherapy programmes and it was
four years before I was sent to a pain clinic. I
was never denied access to any services but,
for both fibromyalgia and ME (which I was
also diagnosed with), there is no provision of
services at all to meet my needs. Any treatment
I have received has never lasted any longer than
maybe a few days or a week.
You are not dictating your
life anymore, your illness is
dictating your life and what
you are able to do and it’s very
restricting.
I have been living with fibromyalgia now for ten
years and have had to move closer to my family
so they can look after me. My sleeping pattern
is so bad I sometimes sleep for 12-14 hours
but when I waken I still don’t have any energy
or feel like I’ve had a brilliant sleep. Or I go to
bed and can’t sleep at all; sometimes it could
be another four hours before I actually get to
sleep. I don’t cook for myself, I had a wet room
installed as I couldn’t manage the bath and I live
in a bungalow as I couldn’t manage stairs. My
only mobility at the moment is driving, walking
is terrible and my sister supports me 90% of the
time. I get very little housework done as I would
do one room and then I would have to sit down,
so my sister helps with the housework and the
shopping. My parents are elderly and I feel I
should be looking after them but I can’t. All I
can do is drive them about and then they have
to look out for me.
I have a lot of involvement in a fibromyalgia
support group which keeps me focused, it’s
nice to meet people who are going through
the same thing as you and you can share pieces
of advice about what has worked for you. But
living like this can be very frustrating and it
can drag you down emotionally. You are not
dictating your life anymore, your illness is
dictating your life and what you are able to do
and it’s very restricting.
When I was first diagnosed with fibromyalgia I
felt very alone and didn’t know where to turn.
Other people do not fully understand that there
is a lot of pain involved and they don’t see the
debilitating lack of sleep and the fatigue during
the day. Unless someone cares for you or sees
every minute of your life, then I don’t think
people fully understand it. If you make a really
big effort one day and shower and dress and do
your make-up, you can look the best, but that
is not the true picture of how you are feeling.
You lose a lot of people who you thought were
friends. This is not a glamorous lifestyle to have.
A hidden condition | Ten people living with fibromyalgia tell their story
11
Carol’s story
I was taken into hospital with extreme pain down
my side and around my diaphragm and neck
and I collapsed a couple of times. They removed
my gall bladder and I woke up in intensive care.
When I woke I couldn’t move and that was the
start of what I now know is chronic fibromyalgia.
(Female)
I had been having pains before I went into
hospital. I was scanned and it was discovered
that I had one gall stone. I thought the
operation was to remove the gall stone but they
removed the gall bladder as well. The operation
took place in January 1999 and I have been
living with the pain since then, nearly 17 years.
In my journey to get a diagnosis I saw at least
seven health care professionals, including my
GP and private consultants. One consultant
told me it was constipation whilst another said
he had never seen anyone in so much pain and
did not know what was wrong with me. Some
doctors I have come into contact with think it’s
all in my head and I have had a lot of trouble
trying to convince clinicians that fibromyalgia
actually exists. The one and only time I saw a
pain consultant I had a horrendous experience,
he did not treat me like a human being, he
pressed along the vertebrae of my back and
when I got up, I was screaming in pain. He said
“for goodness sake it can’t be that sore, I won’t
be giving you a spinal injection anyhow”. When
I got home my whole spine was black and blue,
he left me worse and the pain down my spine
went on for nine months solid.
…some doctors I have come
into contact with think it’s all
in my head and I have a lot
of trouble trying to convince
clinicians that fibromyalgia
exists.
After going to a number of different consultants
12
the doctor referred me to a rheumatologist but
it would be 18 months before I would be seen. I
couldn’t wait that long so I lifted the phone and
made an appointment with a private consultant
rheumatologist and he diagnosed me quite
quickly. Going privately I got the diagnosis in
eight days but I had waited one and a half years
on the NHS and was no further on. I paid to
see this consultant and he diagnosed me after
five minutes, he said “I have seen you walk and I
think you have fibromyalgia and you will have to
live with it” and I didn’t have time to question it.
I would have liked him to talk to me about how
I was feeling and provide me with some sort of
support to manage it, especially because I was
paying to see him.
Throughout my diagnosis journey I had great
support from the two girls that I share a house
with. One girl in particular really understood
and was there for me when I needed her. I
wouldn’t wish this on anyone, sometimes I feel
that life just isn’t worth living. I was a social
worker and was always out and about and
now, when I’m feeling low, I don’t want to see
people or I feel inferior or humiliated about how
I look and how I’m feeling. I used to hold lots of
dinner parties and went out and socialised but
that has become totally non-existent. Before
my diagnosis, subconsciously, I thought I had
cancer and I think my family thought that too
but we never discussed it. When I was told I had
fibromyalgia and it was a muscle pain condition
I thought “thank God I don’t have cancer”. That
was the one positive thing to come out of my
diagnosis, I wasn’t going to die.
A hidden condition | Ten people living with fibromyalgia tell their story
When it came to sorting out how I was going to
survive financially I knew a man who worked in
the Citizens Advice Bureau, he was a good family
friend, and he said to me that I wouldn’t be able
to go back to work and asked had I thought
about the finances. That got the ball rolling and
the Disability Living Allowance doctor came out
to see me. He was able to see exactly what was
wrong with me and told me I would get benefits
indefinitely because of my diagnosis.
I have never been offered any treatment for my
fibromyalgia; I’m on anti-depressants and tablets
for diabetes and high blood pressure. To make
matters worse, I have problems with my stomach
as well and if I took a painkiller today I would
be in extreme pain in my tummy, so I have to
weigh up the worst of two evils. The GP reviews
my medication only when I go to have them
reviewed. I usually go when I feel I’m in that dark
place that we sufferers go to and I would ask for
my medication to be changed.
The GP works with me; he is the best GP in my
area. Throughout my fibromyalgia journey I
didn’t really get any care from health and social
care services apart from my GP, he did his best
for me. There are no suitable services available
for fibromyalgia sufferers. GPs need to have
knowledge of fibromyalgia and ME to know to
refer patients to the right place.
take me up the stairs. To give you an idea of
what it feels like to be me, imagine walking with
breeze blocks on the sides of your legs and your
legs are covered in open sores and someone
scratches down your legs, you can start to get
an idea of what the pain feels like for me. When
I go out I can’t walk very far and need to make
sure I can park close to where I’m going and I
won’t have to climb any stairs. I used to need
help with personal care but now I have a shower
downstairs which I can sit in by myself, it is
fantastic.
My mood is also affected. If you can imagine
going into a dark place, a dark room with no
light, that’s how I feel. I sometimes have a cry
day, I just cry very easily, I don’t like feeling that
way, I am just not in control.
Like any other condition, people who don’t
have it don’t take time to understand it and
understand what you might be going through.
I long for the day when there are clinics for
people with fibromyalgia and ME where they
can get some sort of solace and help and not be
given the run around or told “it’s all in your head,
take a pill and go home.” We need people to
understand and help.
The GP works with me; he
is the best GP in my area.
Throughout my fibromyalgia
journey I didn’t really get any
care from health and social
care services apart from my
GP, he did his best for me.
There are no suitable services
available for fibromyalgia
sufferers. GPs need to have
knowledge of fibromyalgia to
know to refer patients to the
right place.
Living with fibromyalgia is awful; I have to sleep
downstairs as there is no way my legs would
A hidden condition | Ten people living with fibromyalgia tell their story
13
Mary’s story
I had been going to the doctors feeling exhausted
and very sore and a lot of other problems as
well. The GP did tests and it came back as an
underactive thyroid, which I was treated for and
didn’t feel any better even though my thyroid was
back to normal.
(Female, 45-54 years old)
After being treated for an underactive thyroid,
I went back to the doctor as I was in so much
pain and so tired and she said to me “OK, we are
going to have to give you something for your
fibromyalgia.” That was the first time it was ever
mentioned to me that I might have fibromyalgia,
although I had suspected myself for years that I
had it, ME or chronic fatigue.
…it was a relief to be
diagnosed as opposed to just
snapped at and told to take
ibuprofen.
I’ve had symptoms now for ten years but it
was only four years ago that fibromyalgia was
provided as a diagnosis by my GP. I had been to
see another GP in the same practice and told her
that I was in so much pain, and she looked at me
and just said, “well you are going to have to just
take some ibuprofen”, she didn’t do blood tests
or anything. When my usual GP diagnosed me,
it was a relief to be diagnosed as opposed to just
snapped at and told to take ibuprofen.
The GP referred me to a rheumatologist and
I waited eight/ nine months and still hadn’t
heard anything. I went back to the GP and she
had sent the letter but there must have been
some sort of error because rheumatology had
not received it. The GP sent it through again
as urgent but I still had to wait another few
months. In total, I had to wait over a year to see
the rheumatologist who sent me for a scan and
x-ray and diagnosed me with fibromyalgia, early
14
stage osteoarthritis and she also thought that
I might have rheumatoid arthritis as well. The
consultant then sent a letter to my GP basically
discharging me back to my GP’s care, so I only
saw the consultant once.
When I first presented with symptoms at least
ten years ago, the hypothyroidism masked the
fibromyalgia as it has similar symptoms, but
when I was treated for the underactive thyroid
and it didn’t improve it occurred to the GP it
might be something else.
After my diagnosis from the rheumatologist,
my GP referred me for physiotherapy and
they were very nice but, on certain days, the
physiotherapist could see I was fatigued. She
did some research and advised me to attend
a class for fibromyalgia patients. I went to
one class but it was during the day which was
difficult for me as I work. There were six or seven
people there and the physiotherapist basically
told us that we wouldn’t get better, it will only
get worse. I found it really depressing so I didn’t
go back to the other three classes. That is the
only support and help I have had, nothing else
has been offered and I was very angry that
the rheumatologist signed me off and put me
back into the care of the GP. There needs to be
some consistency because some people would
be constantly kept on with a rheumatologist
whereas I was signed off. There is no specialist
consultant care which is very very frustrating, if
I had another illness I would be under the care
of a consultant and sent for reviews periodically
but there is nothing, you are sent home to rot.
A hidden condition | Ten people living with fibromyalgia tell their story
I feel I am lucky that I have a
GP that believes the condition
exists.
I was devastated when I got my diagnosis, I was
working two part time jobs and I felt gutted
that there was no help whatsoever. I feel I am
lucky that I have a GP that believes the condition
exists because I know from my experience that
people are dealing with GPs that say it doesn’t
exist so, from that perspective, I am lucky but
all she can do for me is give me medication to
deal with symptoms, there is nothing that can
actually make me feel better. I am currently on
sleeping tablets, anti-depressants, beta blockers,
thyroid medication, vitamin D and calcium
tablets. I was also given amitriptyline and lyrica,
which is specific medication for fibromyalgia
patients, but after doing some research I came
off them as it seems to make people worse.
Now I just manage with ibuprofen, paracetamol
and migraine tablets and, to be honest, they
don’t really work. Sometimes I feel the pain is
so great that the medication doesn’t really ease
it. Nothing really makes you feel better because
you have the side effects from the medication
as well. I have not been offered any other
treatment and the only review of medication
I get is for the thyroid medication every six
months, no other medication is really reviewed.
I had been working two part time jobs but I
had to give up one. I work in a family business
every afternoon when I am well enough which
is easier than working two full days, which I had
been doing in my other job. The business is at
my house and that is the only reason I can work.
If I wasn’t working at home I wouldn’t be able to
work as no other employer would put up with
the days that I am not able to go into work so I
haven’t applied for benefits yet.
I have found other health professionals
have absolutely no understanding of or
acknowledgement of the condition. When I
was in hospital they asked if I had any other
conditions, when I said fibromyalgia I might
as well have said toothache as they didn’t
understand or didn’t know what fibromyalgia
was. There is a need for a greater understanding
of fibromyalgia amongst health professionals
and there also needs to be specialist services
or someone who specialises in the area which
people could be referred to, for example, a
consultant in charge of fibromyalgia.
Living with fibromyalgia I find my life is really
limited. When you wake up each morning, you
wake up absolutely exhausted like you haven’t
had a proper night’s sleep. You can’t organise
anything as you don’t know if you are going
to be well enough to go and if you do feel well
enough you know that over the next few days
you will be really really tired and sore all over or
spend the next few days in bed. It is very very
limiting on your quality of life.
You find you lose a lot of friends because you
let people down as you are not well enough to
go to something or you just can’t keep up with
them. It’s tough on family too because if you
have a really bad day, they are the ones who
have to go and make your dinner and look after
you. If a family member has something on, they
are never sure if I will be well enough to go with
them. They have to be very, very understanding
and, thankfully, mine are, but it has a big impact
on their life too.
I can’t do housework anymore; I can’t hoover,
wash floors or do any heavy work. On a good
day I could maybe do some light work and cook
but on a bad day I would be in bed.
Even if I do the hoovering on a
good day I could be in bed for
a week afterwards and it isn’t
worth it so someone else has
to do that for me.
Thinking about my condition, I feel like part of
my life is over, unless something miraculous
happens and a cure is found then my life is
just going to go down; and most people don’t
understand this illness so it does make you
despair. The problem with fibromyalgia is that
you look ok physically and I only go out when
I’m feeling a little better and have my makeup
on. The reason this illness is called the invisible
A hidden condition | Ten people living with fibromyalgia tell their story
15
illness is because when you are not well you
can’t go out so no-one sees that. I think that
most people just think you are lazy and are
faking it. Also, there is so much misdiagnosis
because there is no proper test and it is so
frustrating because you feel like, not only do you
have to fight the illness, but you have to fight to
be believed that you have an illness as well.
Not only do you have to fight
the illness, you have to fight to
be believed that you have an
illness.
I am involved in a support group and that’s the
only thing that keeps me sane. There is nowhere
else for people to go and everyone supports
each other. The group are also on Facebook and
we can chat to each other and keep each other
going.
16
A hidden condition | Ten people living with fibromyalgia tell their story
Olive’s story
I fell and hurt my back while out walking in 2009,
I was off work for many months and the pain
continued long after the doctors felt it should. It
wasn’t until three years later that I was diagnosed
with fibromyalgia.
(Female, 45-54 years old)
Over the years I’ve had episodes in hospital with
pain and medical investigations carried out.
At one point I was told I would have to have
my kidney removed but when they did further
tests, they couldn’t find anything wrong. I had
really bad gynaecology problems for many
years and had a hysterectomy just before my
40th birthday, I didn’t realise until after I was
diagnosed with fibromyalgia that this can be
one of the symptoms.
After I fell and hurt my back, I was sent for
physiotherapy and I went myself to the
chiropractor and to someone who dealt with
pain management but, while some things
helped for a little while, nothing permanently
helped.
It wasn’t until 2012, after three years of being
told there was nothing wrong with me, I went
to a new GP within my practice. She looked
at my file and asked me a few questions and
said “I think you’ve got fibromyalgia.” She
referred me to a rheumatologist but I was told
I would have to wait a year. I had a private
health policy with work so I went private and
was seen in April 2012 and he confirmed the
diagnosis of fibromyalgia. Later, when I had my
appointment with the rheumatologist on the
NHS, he also confirmed the diagnosis. In both
instances when I saw the rheumatologist (NHS
and private), I was with them for five minutes,
there were no blood tests taken, no x-rays,
nothing, it was a case of being poked in a few
certain spots and told I had the trigger points
and had fibromyalgia. I had one appointment
with the rheumatologist on the NHS and one
private appointment and then I was discharged.
Both rheumatologists wrote to my GP and
recommended lyrica (used in the treatment of
fibromyalgia) and various other pain medication.
I was with the rheumatologist for
five minutes, it was a case of being
poked in a few certain spots and
told I had the trigger points and had
fibromyalgia.
The GP prescribes my medication but these are
not reviewed on a regular basis. If it is reviewed
it’s because my condition has changed,
possibly due to a flare up, and I go to see the
GP because I need something else to help with
the pain. It is very difficult to establish a good
pain management regime. Generally I find
the medication helps in that I am not in agony
but I’m not living a normal life with it. I’m not
working, I’ve no social life and I spend a lot of
time in bed. I can’t do a lot of things that my
family would want to do.
As part of my medication I have also been given
a morphine patch, it never takes the pain away
but it helps, it numbs it a little. I’ve been to the
NHS pain management clinic where I was given
facet joint injections, which seem to help for a
while, but my last injection didn’t last very long.
I was told there was nothing they could do for
me and was discharged back to the care of my
GP. While at the Pain Management Clinic I was
however offered a pain management course
and I’ve received a couple of letters asking was
I still interested and I replied to say I was, but
this was over a year ago and I haven’t heard any
more about it.
A hidden condition | Ten people living with fibromyalgia tell their story
17
I asked the consultant at the pain management
clinic if I could get a lidocaine infusion as I’d
read on some of the fibromyalgia forums that
people in other parts of the UK are getting these,
but I was told that the pain clinic I attended
did not offer them for fibromyalgia. I found a
pain consultant who offers lidocaine infusions
privately and I had four to six weeks of very good
pain relief from that.
I did try swimming to help keep my muscles
supple but the water in the pool was too cold
and it made my condition flare up. I also did
an Expert Patient course with Arthritis Care in
my local leisure centre and it taught me how to
make the most of my appointments with the GP,
as well as some relaxation exercises and learning
to live with a chronic health problem. Through
this course I also got to meet other people like
me who had a chronic illness.
I had quite an active job before I hurt my back
and, after a few periods of being on and off sick,
I had to leave the job I had been in for over 20
years. Whilst I was still working I was able to
get Disability Living Allowance (DLA). I had to
look into this myself; no-one provided me with
any information on how to go about getting
benefits. I found a website which costs £20 a
year for membership and they have good guides
on there about filling in forms for benefits. I
found this really useful as I had never claimed a
benefit before and found the forms very tricky.
When I left work I used this website again to
help with my application for Employment and
Support Allowance (ESA) and the online support
groups I dip in and out of also helped with this.
I’ve all these questions but
there is nobody to talk to, noone is really knowledgeable
enough to help.
There is not enough support in place to help
people like me manage this condition. I
get more help from a Facebook page of a
fibromyalgia support group than I do from
anywhere else. What would really help would
be to have someone to talk to about it. I’ve
all these questions but there is nobody to talk
18
to, no-one is really knowledgeable enough to
help. My friend has multiple sclerosis (MS) and
she can contact an NHS MS nurse if she has any
queries or if she is worried about her medication
or how things are going. There’s no-one like
that for people with fibromyalgia to go to. The
only person I can go to is my GP and sometimes
I feel like a hypochondriac and that I’m wasting
their time. My GP has been very nice but there
is another GP in the surgery who I would not go
back to. I find them dismissive, as if they don’t
believe in me or my illness. If they had a nurse
who was a specialist in fibromyalgia in the GP
setting that would be more helpful.
The services available to fibromyalgia patients
do not meet our needs and I don’t know what
other services are available. I have been offered
pain medication but there is no-one to sit down
with me and explain the basic symptoms and
how the fatigue and other symptoms may
affect me. Anything I have found out about
fibromyalgia I have found out myself.
People don’t understand what it’s like to have
fibromyalgia. They tend to think it’s what the
doctor diagnoses you with when they don’t
know what’s wrong with you. Even within the
family it’s very difficult for people to understand
as one day I can manage to help make dinner
and then the next day I can’t even get out of
bed.
I had to leave work and I felt very guilty that I
had wrecked the plans for the family. I was the
key wage earner and now our whole financial
setup has gone pear shaped. It puts a lot of
pressure and strain on me; I had a lot of guilt and
was very depressed not knowing how we were
going to cope and how I would cope with the
pain. One of our children found it particularly
hard to cope with and understand. They would
call me lazy and give me that sort of verbal
abuse. It affects everyone in the family, not just
me.
I had a lot of friends in work but we haven’t really
kept in touch. There is one girl who still keeps
in contact with me and we would meet once
a month for coffee. I have another friend who
A hidden condition | Ten people living with fibromyalgia tell their story
has ME and once a fortnight I would call round
to her house as she’s not well enough to go out.
You feel so isolated and you just feel people
don’t care, or they just don’t know how to cope
with you. Initially people would have invited me
to come out with them to a Christmas dinner, for
example, and then it gets to that date and I’m
not well or I go but then have to leave straight
after the meal as it takes too much out of me.
You feel so isolated and you
just feel people don’t care, or
they just don’t know how to
cope with you.
There is also this mentality among some people
that everybody who says they are disabled is
a cheat and a fraud and are only out to fleece
the government. Every time I put a form in, I’m
stressing out, “will they believe me, will I get the
money, what happens if I don’t get it this time,
will they believe me if the medical appointment
happens to be on a good day?” I have all those
extra stresses, people don’t view an invisible
illness as a disability.
I feel that having this condition I have to fight for
everything. It’s a fight to get diagnosed, a fight
to make sure you are on the right medication,
a fight to get to see somebody and having the
fight to wait a year and a bit to get onto a pain
management course which no-one has even
told me what it’s about.
I don’t know if my story will help anybody but,
hopefully, it will show that you can go from
being a relatively normal person in society to
living in your own wee world quite quickly.
I feel that having this condition
I have to fight for everything.
It’s a fight to get diagnosed, a
fight to make sure you are on
the right medication, a fight to
get to see somebody.
A hidden condition | Ten people living with fibromyalgia tell their story
19
John’s story
My fibromyalgia goes right back to my childhood.
When I was younger I had no energy, had
headaches and pains which were perceived as
growing pains. I am now in my 50’s and have only
been diagnosed in the past ten years.
(Male, 45-54 years old)
I’ve always had symptoms of fibromyalgia but I
was always told to shake myself and get myself
to school or work, but my worst flare up came
in 2005/ 06. This is what put me down and
stopped me working. My father also had the
condition since 1977 but only got diagnosed
a few years before me and because we have
the same doctor then that’s how I got my
diagnosis also. The actual diagnosis process
was very quick. I went to the doctor in 2005/
06, he examined me and said, “I think you have
fibromyalgia” and I think my appointment with
the consultant rheumatologist was six months
later.
After my appointment with the consultant I was
put on medication, went to pain clinics, and
had psychiatric treatment. My main problem
was going to the doctors and explaining how
much pain I was in and that I needed stronger
painkillers, I had to fight to get them. One
doctor would give me painkillers that worked,
then I’d go back to another doctor who wouldn’t
give me the same painkillers as they were
too strong. I eventually left that surgery and
went to another surgery where I was sent back
through the whole process again - back to the
consultant as there were a lot of things the first
doctor hadn’t done, for example, simple blood
tests. I also received a diagnosis for myalgic
encephalopathy (ME) last month. I knew I had
fibromyalgia but I knew I had something more. I
had to go private to get that diagnosis.
There is no treatment for fibromyalgia in
Northern Ireland on the NHS. There is nowhere
to be sent, it’s not the doctor’s fault, it’s not the
20
specialist’s fault, there’s just nothing. There
is a complete lack of services and a complete
lack of education on it. I went to the doctor, a
specialist and pain clinics, but was told there
was nothing more they can do for me, so I tried
alternatives such as hydrotherapy, acupuncture
and acupressure. I found the hydrotherapy was
brilliant when you are actually in the water but
then I have to get out and get dried, get dressed
and get back to the car and, by the time I get
home, whatever benefit you had got is gone.
I would like to be able to receive lidocaine
infusions which seems to help a lot of people.
Anyone I have spoken to that has received it
said they felt great for the first few weeks before
it wears off again, but when you are talking
about somebody who had pain for 10 years
plus, offering them a fortnight off is a God send.
Some Trusts in England, Scotland and Wales
provide the lidocaine infusions on the NHS yet,
in Northern Ireland, we have to go private if we
want them.
There is a complete lack of
services and a complete lack of
education on it.
I am in phone contact with my doctor about
four times a year and have a yearly MOT where I
would go and get my blood taken and whatever
other checks need done. It is easier for me to go
once a year than four or five times a year. I don’t
find my current medication very effective, but if
I don’t take my medication, then I basically just
descend into hell.
I used to work in the construction industry and
A hidden condition | Ten people living with fibromyalgia tell their story
they were going to train me up for different
machines but I took ill with pneumonia and a
collapsed lung and it took me a long time to
recover from that. I wasn’t able to go back to
work after that and my partner and I had an
awful lot of stress trying to get benefits. We
had so many tribunals that, in the end, we went
to the Ombudsman. There was nobody to
help us, we did it all ourselves and that pushed
me further and further down. In order to get
benefits I had to convince them, one, that I had
this illness and two, that it was a genuine illness.
There are so many people out there who don’t
believe it.
what has to be done around the house.
I have no energy, right now I am living in a two
bedroom flat on the first floor of a building
which has a set of steps down to the ground. So
I’m living in a flat which I can hardly get out of
and I have rarely been out this past four - five
years. I need help with my fight for suitable
accommodation.
The person that I once was is gone. I have gone
through a grieving process, it’s exactly the same
as if you were grieving for a family that died but
it is you that has died. I used to love swimming,
canoeing, walking, going to the disco and
playing darts but now I’m confined to the same
four walls watching TV with the sound down
and sub-titles on as I’m both light and sound
sensitive. If I get one of my better days and think
I can go to a shop, go for a walk then you know
there will be payback and, if it doesn’t happen
immediately, it will be the next day and the day
after.
I had to convince them that I
had this illness and that it was
a genuine illness, there are so
many people out there who
don’t believe it.
Our kids are grown up and away but the
condition has had a huge impact on my life and
on my partner’s life. Every day I wake up with
what feels like the worst hangover of my life
even though I haven’t touched alcohol. I have to
take painkillers to get out of bed.
We’ve stopped going out and my partner
doesn’t like going out by herself and she is
staying in more to care for me, so it’s very
difficult for her as well. I think it is harder for her;
she has to watch me, help me and do things that
she shouldn’t be doing, she’s my partner and
she shouldn’t have to do those things. I can’t
even share a bed with her, I can’t cuddle her or
she can’t cuddle me. Everything we knew about
life has gone. She always has had anxiety and
depression but having to deal with me and this
illness is making it worse for her. She has had
to take over a lot of things that I did around the
house. I have to rely on her for about 98% of
Socially, I have not been out in about seven
years. We occasionally get out to my mum and
dads, they just live across the park from us, but
my energy levels go very quickly so, if I do get
out it’s usually an hour and an hour is pushing it.
It’s usually half an hour and if I get to an hour I’m
going to regret it. I’ll then have to spend a week
in a darkened room to recover. Normally, by the
time I am out of the flat, I am wrecked because
I’ve had to walk down the steps from the flat –
I’ve already used 75% of my energy just to get to
the car.
Friends dropped away very, very quickly.
Quicker than I thought. I can honestly say,
this year alone I have had a friend knock on
my door about three times. It is mainly family
that comes to visit. I can’t blame my friends for
dropping away because most of them I have
known through different things, whether it be
swimming, cycling or canoeing. I can’t do those
things anymore so the thing I had in common
with these people is no longer there.
Most of the frontline staff of
all the different departments
I have been to have all been
absolutely brilliant. The
problem is that a lot of them
have no education of the
illness so they don’t know how
to treat you.
A hidden condition | Ten people living with fibromyalgia tell their story
21
I am involved with a community and voluntary
group; although I can’t get to the meetings the
Facebook group is fantastic. It is a closed group
which means we can talk together about our
condition and everyone understands.
Most of the frontline staff of all the different
departments I have been to e.g. rheumatology,
neurology, occupational therapy and
psychology have all been absolutely brilliant.
The problem is that a lot of them have no
education of the illness so they don’t know
how to treat you. When you go to people for
help you presume they have training and then
you find out they haven’t had any. Some staff
believe you but don’t know what to do about it
and then you have others who don’t believe you.
There is a small percentage of the population,
I would say 5 – 10%, that fully understand
fibromyalgia. The reason they understand it is
that they know someone that has it or they have
it themselves. The other 90%, most of them look
at you and think there’s nothing wrong with
you because you don’t have a broken arm, or
you aren’t permanently in a wheelchair. It is an
invisible illness, there are people that look at me
and say, “you’re looking great today.” In response
I say, “thank you very much, it’s the drugs.” If it
wasn’t the drugs I wouldn’t be out in the first
place for them to see me.
22
A hidden condition | Ten people living with fibromyalgia tell their story
Laura’s story
If I had not been going for orthopaedic referrals,
if they hadn’t been good and side-lined me into
rheumatology, I would say that I could still be
beating my head against the wall as my GP never
mentioned fibromyalgia.
(Female, 45-54 years old)
I finally got my fibromyalgia diagnosis six years
ago, but have been living with the condition
a lot longer. My diagnosis was a long drawn
out process; I had been going to the doctor
with a pain in my back, then pains here, there
and everywhere. I kept getting fobbed off, so I
went and got an MRI scan done privately then
went back to the doctor and told him there
was a problem with my back. I had arthritis
in my hand and at one of my orthopaedic
appointments I had time to talk to the
consultant and told him I was not sleeping and
the different problems I had. He started poking
me in different places and then told me that I
had fibromyalgia. A couple of my friends had
been telling me I had all the signs but I didn’t
believe them. Overall, it took about a year and a
half to get my diagnosis.
I went back to the doctor and asked to be
referred to the pain clinic but he said no, he
could deal with it. He said I had chronic pain
in my back but didn’t mention fibromyalgia. I
had another orthopaedic appointment and was
talking to the consultant and he asked had I ever
seen a rheumatologist. I told him my doctor
wouldn’t refer me to the pain clinic, so there
was little point in asking for an appointment
with rheumatology. Orthopaedics put it in their
report and I ended up going to a rheumatologist
who confirmed that I had fibromyalgia. It was
good in a way as someone had confirmed
I wasn’t a mental case, but I was no further
on as the advice I was given for fibromyalgia
contradicts the advice I was given for my
arthritis.
I went back to the doctor and
asked to be referred to the
pain clinic but he said, no, he
could deal with it.
Eventually, I got an appointment at the pain
clinic and it happened to fall on one of my bad
days so they took me off the medication I was
on and put me on stronger medication. They
also asked would I be interested in attending a
pain management programme that they run, so I
have my name down to go to that as well.
I’ve gone back to my GP several times with
aches and pains or just feeling really down
and depressed and have just been fobbed off
with “oh it’s just your fibro.” On one particular
occasion I went to the GP and told him the pain
was getting much worse. He talked about giving
me injections but told me I would have to lose
weight first, as there was no point in referring
me for injections as they may not work due to
my weight. This was the first time I had met this
doctor and I was very upset. I did not need to go
in there and be told “you’re too fat, you need to
lose weight”, because I was already feeling rotten
that day. I came away from the doctor feeling
worse off. It’s a vicious circle, I can’t exercise
because of my back and my knees and, because I
can’t get out, then I sit in and comfort eat.
I’m on a lot of medication for the pain/ nerves
and also to help me sleep. It’s difficult to say
how effective my medication is because I
don’t know until I stop taking it. At the minute
it appears to be working as I’m not having
many flare ups so I would be reluctant to
A hidden condition | Ten people living with fibromyalgia tell their story
23
change. Having fibromyalgia can also make
you depressed so through my job I also see a
psychologist. I find counselling really helps
me, he understands or listens and I’m happy
going and talking with him, I’m not in that dark
place anymore. The doctor sometimes doesn’t
understand, if they see you and you look OK,
they think “oh you look OK, you’ve got here OK,
why do you need that medication?” The doctor
also sent me for physiotherapy on my back and
I’m getting exercises to do which is difficult but
I go and, if it works, it works and if it doesn’t, it
doesn’t. I have nothing to lose by going.
I would love to work part-time, but I don’t know
what I could do without being a burden on other
employees. I retired early from work because
of the pains and, because I’m retired, I have a
pension, but as my pension is over a certain
amount it means I can’t claim any benefits. I
worked for 29 years and I’m entitled to nothing.
The only thing I could apply for would be DLA
but there are so many horror stories from others
who have tried to claim it that the thought of
applying terrifies me. I think you have to get a
GP to back you as well but whenever I go to my
GP, I have to wait two weeks for an appointment,
and if you want to see a specific doctor, you have
to wait longer, so every time I go, it’s someone
different I see.
I get the impression with some GP’s that
fibromyalgia doesn’t appear on their radar,
it’s like if you don’t have a plaster cast on it, it
doesn’t exist. The GP will tell you, you need to
exercise, but there’s no plan or guidance for
what to do. There needs to be a nurse specialist
who deals with pain where people with
fibromyalgia could go to and ask for professional
help. There needs to be more awareness of the
condition with health professionals and the
public.
wasn’t for them, you know, I wouldn’t make it
out of bed. I don’t really socialise, if you were to
phone and ask me to go out next Friday night,
I would have to say “No, I’ll let you know nearer
the time.” I find I can’t cope in a group of people
with everyone talking and sometimes, even the
noise in a shopping centre I find hard to deal
with and have to go home. I tend to shrug the
fibromyalgia off but it is hard trying to keep it
tucked away. I have two friends that I would see,
one of them is really good, but the other just
doesn’t understand.
If I find I have a good day…I
try to do too much and I can
do nothing for the next couple
of days.
I find if I have a good day I try to do things
around the house and then I try to do too much
and I can do nothing for the next couple of days.
I know I have to pace myself but when you feel
OK I think to myself, well I have to do that today,
because I might not feel good tomorrow. My
mother is in her 80’s, so with regards to family I
don’t have any support, it’s really me on my own.
I take the attitude that I’m OK, I can manage, but
in some ways that goes against me as I would
rather do without than go and ask for help.
One of the things about having fibromyalgia is
that it’s like going through a grieving process
because I’ve lost my life; I’ve lost the life I had,
to be able to go out, to take the dog out, and
just to be able to do normal things. It’s like I’m
grieving for all the things I can’t do now.
There needs to be more
awareness of the condition
with health professionals and
the public.
I live on my own but I have animals, and I’m
glad I do have them because some days, if it
24
A hidden condition | Ten people living with fibromyalgia tell their story
Kelly’s story
My fibromyalgia was triggered through
pregnancy with my daughter. I was told at the
time it was post-natal depression but I didn’t
feel depressed and I had pain in my joints. It has
taken nearly four years to be diagnosed with
fibromyalgia.
(Female, 25-34 years old)
I was fine until I got pregnant, but the pregnancy
must have triggered something off. I’ve always
had bouts of exhaustion and always recovered,
but not after pregnancy, I’ve never recovered so
that’s just over four years now I’ve been living
with this.
I was exhausted and had severe joint pain during
my pregnancy; I was diagnosed with pelvic
girdle pain and was sent for physiotherapy at the
end of my pregnancy. It got really bad when I
took what is called ‘brain fog’, which I had never
heard of or experienced in my life. After the
birth of my daughter I couldn’t pick myself up
again and reasonable things were a real chore
so I went to the GP. As I was struggling with my
memory I was sent to a neurologist and had a
brain scan, which was fine, so the doctor then
diagnosed me with postnatal depression. I told
the doctor I didn’t feel depressed, it was more
that I wasn’t able to do things I wanted to do,
but he insisted it was postnatal depression and
put me on medication.
I told the doctor I didn’t feel
depressed, it was more that
I wasn’t able to do things I
wanted to do, but he insisted it
was postnatal depression.
I moved house and, as a result, changed GP
practices. I made an appointment with my new
doctor and explained everything, telling her
how exhausted I was, how much pain I was in
and how numb I feel with it now and that it was
making me anxious. Her response was to wear
an elastic band around my wrist and snap it
when I felt anxious! Again, I was diagnosed as
having post-natal depression and was offered a
course of counselling and cognitive behavioural
therapy (CBT).
I was still having the pain and spasms and
struggling to keep going so I paid privately
to see a chiropractor for my back. She was
very good and asked about my family history
and, when I told her about my father dying
at 45 with rheumatoid arthritis in his internal
organs, she asked had I ever been checked by a
rheumatologist. I went back to the doctor again
with that dread thinking that they would think
of me as a hypochondriac. I explained about
my dad and what the chiropractor had said and
the doctor said “you don’t need that.” I insisted
that, because my father died at 45 and I’m only
30, I would like to get checked. They checked
me over and the results came back positive. The
doctor then told me “this may not necessarily
all be in your head after all, so we’re going to
change your medication and we suspect you
may have arthritis.” An urgent referral was made
for me with the rheumatologist, but it still took
six months. The rheumatologist did an x-ray
and MRI scan and said there’s no sign of arthritis
but diagnosed me with fibromyalgia and
Hypermobility Type 3. I asked for someone to
explain to me what I had been diagnosed with
but was told I would see the specialist in a few
weeks and I was just left with a diagnosis. I was
given no information and nobody could tell me
anything about it.
A hidden condition | Ten people living with fibromyalgia tell their story
25
I was given no information
and nobody could tell me
anything about it.
Recently I’ve taken the decision to detox and
come off all my medication. I was on a lot
of medication for pain, rheumatoid arthritis,
inflammation, sleeping anxiety and depression.
Now I’m taking nothing as I would like to have
another child. The GP thinks I’m mad but I
want my little girl to have a brother or sister. If
I get pregnant again, I would go back on the
medication after the baby was born. I got no
support coming off the medication after three
and a half years on it, I thought I couldn’t live
without it and I was told I couldn’t live without
it. I want to be as strong as possible so I came
off the medication and the past four weeks have
been horrendous, without the meds I feel more
pain but you find a way to deal with it and block
it out as I’ve accepted it is never going to go
away. I miss the pain relief at night but I might
try some herbal medicine for that. There is no
one size fits all with medication and, especially
with fibromyalgia, no-one really understands it
and there’s not enough known about it.
I’ve given up on the GP, I’m sick of running back
and forth saying the same thing. They take the
attitude, “you’ve got your diagnosis, deal with it,
you’re not dying. We’ve sicker patients to deal
with than you.” The one thing I do find helpful
is the counselling which I was referred to when I
was diagnosed with post-natal depression. The
counsellor has ME so he understands and gives
me lots of advice and coping mechanisms. I also
pay for the chiropractor and acupuncture, it’s
expensive but it really does help me.
A lot more research needs to be done into the
condition and awareness raised. Professionals
need to be taught how to deal with the
condition, GPs don’t seem to have enough
knowledge or awareness of fibromyalgia and
the associated conditions. I am doing my own
research, but nobody is here to help me, to
tell me if it’s OK to do things or try things. It’s
very difficult. There needs to be more services
available on the NHS, for example chiropractor
and acupuncture. People also need something
to motivate them and work towards but there is
26
nothing. I wake up in pain, I go to bed in pain,
it would be nice to see other methods to cope
with it other than just being handed painkillers.
Each case is different and each person’s
treatment plan should be specific to them and
should be reviewed every six months to a year.
I wake up in pain, I go to bed
in pain, it would be nice to see
other methods to cope with it
other than just being handed
painkillers.
When the pain started I had just turned 30, I did
hair and make-up and was always on the go.
I’m not one of these people that lies about and
is really lazy, I would really push myself. I tried
to go back to work part time a year and a half
after my daughter was born and kept pushing
myself to keep going. I want to do things but
I can’t, it’s not that I don’t want to go to work,
I can’t. I’m getting there, but I think half the
battle is focusing my mind to tell myself that
it’s never going to go away and it’s something I
have to live with for the rest of my life. I’ve now
accepted that and pace myself on a daily basis.
I wasn’t raised to live on benefits but I was
advised by a fibromyalgia support group to
apply for DLA, which I did, but I was turned
down. I don’t work because I can’t work, I tried
to work part-time but couldn’t, so the only thing
I can get is working tax credits.
No matter how awful I feel, I make sure I am still
looking good on the outside. One way of coping
for me, even when I’m really bad, is to get up, get
dressed, put my make-up on and do my hair so
I don’t look like death warmed up. My life has
been turned upside down; I’m not the person I
used to be. I can’t make plans as I don’t know
how I’m going to be feeling that day and you
lose a lot of friends. I do my best to explain to
people but they just don’t understand what’s
wrong with you. I feel so isolated. Everything
has been taken from me, my career, my family,
my social life and my relationship with my
partner, and nobody seems to care.
A hidden condition | Ten people living with fibromyalgia tell their story
Paul’s story
My work involved a lot of walking which caused
me a lot of pain. I was sent for x-rays which
showed wear and tear in my spine. I was then sent
to physiotherapy and given medication which did
not control the pain. Three years later the doctor
diagnosed me with fibromyalgia.
(Male, 65 years old or over)
I had x-rays back in 1996 which showed
wear and tear on my spine and I was sent for
physiotherapy and given medication. The
physiotherapy helped a bit but the medication
never seemed to kill the pain. Three years later
the doctor diagnosed me with fibromyalgia.
After my diagnosis in 1999 I made a private
appointment with a rheumatologist. I told him
I wasn’t sleeping well and was taking painkillers
to go out and do a farm walk for work. He
confirmed that I had fibromyalgia.
Not only was the medication
upsetting my stomach, but
it was making me extremely
tired.
I didn’t keep going to the doctor as I soon
realised the tablets weren’t doing me any good
but I did go back to tell him the tablets weren’t
working and ask should I go off them as they
were affecting my stomach. Instead of going
off the medication the doctor gave me further
medication that was to protect my stomach,
but it didn’t help either. Not only was the
medication upsetting my stomach but it was
making me extremely tired – in fact, worse than I
would have been with the fibromyalgia.
At the moment I’m not getting any treatment
or taking any medication, I take a few drops of
St Johns Wort a few times a month, a vitamin
C drink a couple of times a week and a banana
every morning. I have a very good osteopath
who I have been going to for nearly 20 years but
I pay for this myself. I stopped attending the
pain clinic a long time ago as the medication
wasn’t agreeing with me and I didn’t want to
take it anymore. I attend the GP once or twice
a year, I don’t like giving people bother and I
always think to myself there are people in worse
situations than me. There doesn’t seem to be
enough information for doctors, and no doctor
will have time to sit and listen to you.
When I got my diagnosis I continued to work as
long as I could but, in 2001, I gave up my job as
I couldn’t sit long enough to do my paperwork
and I was afraid with all the pain that I’d make a
mistake which would have repercussions on my
health and other people as well. Since then I’ve
had to fend the best I can. I got my pension and
a lump sum from work as I had been there 38
years. If I didn’t have my pension then I would
have been in a serious situation.
I can’t cope with sitting about doing nothing.
I have learned to pace myself and whenever I
find myself getting tired I tend to come in and
rest for a while. Sitting too much would be
counterproductive for me as I get extremely
sore when I sit for long periods of time. I have
to accept the situation I’m in and the possibility
that I may never get better. I try to make the
best of it and do some woodwork and work
on cars, but I have to use specially adapted
equipment. I also changed my lawnmower to
one which makes it easier for me; otherwise
I wouldn’t be able to cut my own grass. My
quality of sleep is very poor and I never get a
full night’s sleep. I am constantly exhausted and
even having a conversation with someone can
exhaust me.
A hidden condition | Ten people living with fibromyalgia tell their story
27
I get the impression that there’s not that much
known about fibromyalgia. The good thing
about my GP was that he realised medication
wasn’t going to solve the problem. The
consultant rheumatologist did not prescribe
medication but asked about my physical activity
and he recommended I keep doing what I was
already doing. A lot of people with fibromyalgia
are keen to talk about medication but I don’t
believe it’s all about medication, I try my best to
fight it and diet is very important in doing that, if
you don’t have a good diet then your body can’t
function properly. I think having a massage to
loosen the muscles helps, and having the proper
seats at home to sit in to support me. Having
a comfortable seat has made a big difference
to me for wanting to sit and watch television. I
find that my fibromyalgia gets worse between
November and March because of the cold and
damp weather.
I get the impression that
there’s not that much known
about fibromyalgia. The good
thing about my GP was that
he realised medication wasn’t
going to solve the problem.
One of the big problems with fibromyalgia is
that it’s a mystery disease and people don’t see
there is anything wrong with you, they look at
you and say “you are looking great, just the same
as ten years ago.” If I had a broken leg it would
be a different story. The thing with fibromyalgia
is that there is physical pain, but there is also
mental pain and frustration that I’m not able to
do what I used to do. You need to have a coping
strategy, I walk a little every morning to get
myself loosened up and I try to keep my brain
occupied so I don’t feel the pain as badly but it
is much harder to concentrate with the pain. I
have my good days and bad and if I can’t do
something one day then I will leave it until I’m
having a better day. I have to keep going, I had
an uncle who had bad rheumatism and when he
got bad he sat in the armchair by the fire and it
ended up he was fit to do virtually nothing and I
often have that view of him when I’m getting it a
bit difficult.
28
A hidden condition | Ten people living with fibromyalgia tell their story
Karen’s story
It all started last summer when we were on
holiday in Cornwall. My daughter wouldn’t
go out, she didn’t want to do anything, she
just wanted to stay in bed. I thought she was
depressed but it escalated and she just gave up,
she’s very into drama and was a film extra, but
she gave up everything.
(Female, 35-44 years old)
My daughter (13 years old) has been having
child that would rather know what was wrong
symptoms now for over a year and we have
with her so she can deal with it rather than
been back and forward to the doctor about ten
being told it’s all in her head. It was hard as
or eleven times but every time we went they
she always had to leave class and go to the sick
would say it was post viral fatigue and wouldn’t
bay in school as she didn’t feel well, and I was
elaborate on what it was. I asked a number of
constantly getting phone calls and I think the
times if it was ME but was told by the doctors
teachers were getting fed up with her. It was
that “we don’t like to label children.” She was
very hard when she didn’t have a diagnosis.
referred to a rheumatologist and they couldn’t
find anything wrong with her. They referred her I was trying to get her help in school as she was
to physiotherapy but they didn’t do anything
finding it very difficult carrying her schoolbag as
with her, we went every week and for 45 minutes her school doesn’t have lockers. I was ringing up
and they just talked to her, asking her if it was all the school asking for a locker for her or double
in her head.
books so she didn’t have to carry as many and
the school would say there’s nothing wrong with
I have fibromyalgia myself and she’s exactly
her. Once she got the diagnosis I was able to
the same as me, same symptoms, depression,
get her on the Special Educational Needs (SEN)
pain, fatigue. I took her privately to see another register and she has a locker now and they are
rheumatologist and he said “you’re right, she
being more helpful.
has fibromyalgia.” My daughter was bullied
very badly in primary school and I think the
I hated that it took so long to get a diagnosis
fibromyalgia was brought on through that.
because she was so down. I think her teachers
and classmates thought she was attention
seeking and she did become quite depressed. I
The doctor said it was all in
was very worried about her and worried about
her head and she was bringing
what was going on. My daughter said she
it on herself as she was
was delighted to have an actual diagnosis and
depressed.
to know that she wasn’t going crazy because
everybody was telling her it was all in her head
Nobody would listen to me and when I kept
and she was starting to believe it.
bringing it up I was told I was being silly and to
stop labelling my child. We saw all three doctors
She doesn’t receive any treatment as she
in our health centre and one of them said it was
can’t swallow tablets. The consultant who
all in her head and she was depressed and was
diagnosed her said if she was going to be put
bringing it on herself through her depression.
on medication it would be amitriptyline but
It made me angry as my daughter is the sort of
A hidden condition | Ten people living with fibromyalgia tell their story
29
she’s too young so, at the moment, we’re using
a TENS machine and ice. She hasn’t been given
the option to attend the pain clinic but I will be
looking into that, which will probably be another
lengthy process unless I go private again. I took
her privately for physiotherapy but because it
was stimulating her muscles, the next day she
hurt even more.
I don’t know that there is any support available
on the NHS to help manage the condition.
When she was diagnosed we weren’t given a
leaflet or anything, the consultant talked to her
about it and said she needed to exercise but
that was it. I got a copy of the letter that was
sent to her school and it basically said she had
fibromyalgia and it was very important for her
to do exercise but it didn’t specify what type of
exercise. I think the consultant meant graded
exercise, like pacing yourself, but that needs to
be made clearer on the letter.
Our experience of the NHS has been absolutely
horrendous and it has all been very vague. There
is very little understanding about the condition.
We’ve had to go private for everything, which is
absolutely ridiculous. If we didn’t have private
health insurance we would still be hanging on
wondering what was happening.
Our experience of the
NHS has been absolutely
horrendous... there is very
little understanding about the
condition.
Before last summer my daughter was very active,
going to drama classes twice a week and would
always have been out, but that has all stopped
as she is too tired. She sees her friends but they
would come over here, she’s not very active at all
now, she rests more. It’s hard as I blamed myself
at the start as I thought it was hereditary and my
husband was upset. We have a nine year old son
as well and they would play fight and he has a
habit of poking or nipping her and we have to tell
him not to do that as it really hurts her. I think he
thought it was a load of nonsense and we had to
try and explain to him and get him to understand.
The condition affects her concentration and
30
her exam marks have gone down a lot and the
teachers are telling her off, saying she could do
better. We, as parents, are being told we need
to push her and that she can’t have too much
time off school but, when you know what she’s
going through, it’s very difficult. Her friends
don’t understand her condition and she feels
that people think she is making it up or that
she’s attention seeking. They don’t understand it
and are not willing to listen, so they’re going to
continue to not understand it.
It’s a hidden illness, you look perfectly fine and
you know if you’re standing with a smile on your
face but you feel like absolute utter hell, nobody
knows, nobody can see it as there is nothing
there for them to physically see. Therefore, a
lot of her friends think there is nothing wrong
with her and she is attention seeking. It’s very
difficult.
It’s a hidden illness, you look
perfectly fine…nobody can
see it as there is nothing there
for them to physically see.
I would like to know where I can get leaflets /
books / brochures as I can’t get them anywhere
and I would like to be able to give these to
her teachers so they understand a bit more
about the condition. I would like my daughter
to be involved with other children who have
fibromyalgia but there doesn’t appear to be any
groups for her age. It’s such a lonely condition.
It would be nice if she could get involved with
others who were the same as her but there’s
nothing, absolutely nothing.
A hidden condition | Ten people living with fibromyalgia tell their story
Jessica’s story
When my symptoms started we were in the
process of organising our wedding. I was
struggling to stay in work and had to reduce my
hours which meant reduced pay and financial
struggles. My husband is also disabled and
doesn’t work so it put a lot of strain on our
relationship and there was a lot of stress and
arguing. We were arguing so much that we nearly
didn’t get married at all, but we did in 2007 and I
was diagnosed with fibromyalgia in May 2008.
(Female)
same process previously and it took ten years
It’s been approximately ten years since the
before I was diagnosed with endometriosis.
pain started and, back then, I was at the GP
It’s difficult as I am registered with one GP but
a few times and they did a lot of blood tests
every time I go I rarely see the same GP. In my
and checked my thyroid etc. to find out what
GP practice there are about six or seven GPs and
was causing the fatigue and pain. Everything
to get an appointment with my registered GP I
came back clear so I was sent to the hospital
would have to wait three or four weeks. Every
to see a rheumatologist. He bent me forwards,
backwards, sidewards, everywhere and poked at time you see a new doctor, whether a GP or
in hospital, I have to explain everything and a
me and pressed on my back and knees and told
doctor’s appointment only lasts ten minutes, it’s
me it was fibromyalgia. I had heard the word
before but didn’t know anything about it, I had it no good.
grouped with MS and thought that it was going
At the beginning, I was working full-time and
to get really really bad and would, eventually,
had to reduce my hours which was a big strain
be fatal. The consultant reassured me that the
worst day I have had will be the worst it will get, as I was trying to pay a mortgage and pay bills.
but it did get worse than that, it got a hell of a lot It’s even more stressful when you don’t know
why you are tired and in pain. I had dizzy spells,
worse. They say it doesn’t progress as such but
it progresses to where your symptoms get more memory loss and hadn’t a clue what was going
on. I started to withdraw a bit from society, I
intense and sort of take over.
stopped going out, so I was literally going to
work and coming home and going to bed. That
Every time I see a new doctor
was my life then and has basically been my life
I have to explain everything
since.
and the appointment only
lasts ten minutes.
My diagnosis took approximately two to three
years, which is ridiculous. Although, from what
I have heard, that is faster than some other
people. To be honest, I didn’t expect to get
diagnosed quickly as I had been through the
When I was first diagnosed I was given lyrica
(a drug for fibromyalgia), but now I am also on
painkillers, beta-blockers, tablets for IBS, antidepressants and tablets for the acid reflux in my
stomach, which is caused by all the other tablets
I take. I have also had hydrotherapy, which was
A hidden condition | Ten people living with fibromyalgia tell their story
31
quite good, but it completely exhausts me for
the day - the effort that it takes to get up and
dressed, get down there, then get undressed
and into the pool for physiotherapy. Afterwards,
I have to get dried and dressed and home, I
do get very tired and even the day afterwards
I’m still tired but after that it does help, it eases
the pain. I received this once a week for 8-10
weeks, but then that was it. You have to get
re-referred back into the system and wait for
the appointments. I once tried reflexology but I
was really ill for a week afterwards with it. I also
tried laughter yoga, which is all about breathing
exercises. I enjoyed it as my mood was better
and it seemed to help the pain. I wasn’t as bad
for four or five days, or even up to a week.
I have just been referred to a pain clinic and had
an appointment with the pain nurse and he just
went through a list of symptoms and told me
about different options and things. I was given a
mini tens machine to try, it does help to a certain
extent but I know other people have tried it and
said it doesn’t help them.
After a number of years, I was referred back
to the rheumatologist as I was having more
pain during the day than I had been but when
I went to see him, he wanted to reduce my
medication from 400mg of tramadol a day to
100mg. Afterwards, the pain got much worse
and I went back to the GP and he increased
them and referred me for a pain management
course but there is a year’s waiting list. That
was last September and I still haven’t heard
anything, so my manager in work referred me
to occupational health, which is how I ended
up going to the pain clinic. I struggled on with
the reduced medication and tried to stay on in
work but I had a full flare up in May this year and
have been off work since. My medication has
been upped to 300mg a day, but I spend most
of my time in bed. If I do go out for a couple
of hours to see my friends or mum then I am in
bed for a couple of days after as those few hours
completely exhaust me.
Before this lapse I had been doing well and
was back at work full-time, although I was
redeployed to a desk job as I wasn’t able to do
32
my original job. I enjoy my job and would like to
get back to work again.
My GP referred me on a pain
management course a year
past in September and I still
haven’t heard anything.
I find the Facebook forums are very good, as
I get information from them and they invite
people to come and speak, for example, pain
nurses. However, some people attending the
group can be unsupportive. At one group,
I said about working full time and someone
behind me said, “well you can’t have a proper
diagnosis of fibromyalgia because anyone with
a proper diagnosis of fibro can’t work”. I do
work and I do have a diagnosis of fibromyalgia,
however, I am very fortunate as occupational
health in work have been very good. It was
through them I was referred to the pain clinic
and also the hydrotherapy. They also have had
physiotherapists out to my office to assess my
workplace.
My own GP is very good but
not all the GPs in the practice
are great, some of them take
the attitude that all I need to
do is exercise and are not very
supportive at all.
My experience with health and social care staff
varies. My own GP is very good but not all the
GPs in the practice are great, some of them take
the attitude that all I need to do is exercise and
are not very supportive at all. When I saw the
consultant last year the nurse that was with him
was quite surprised when I said I worked full
time and said “how do you manage that?” but I
said it was only because of the medication I was
able to manage. The rheumatologist diagnosed
me, wrote a letter for my GP and said “I don’t
need to see you again, you are back to the care
of your GP”. You don’t see him again unless
your GP refers you back. If you are referred back
again then there is another lengthy waiting
period.
A hidden condition | Ten people living with fibromyalgia tell their story
Prior to having symptoms of fibromyalgia I was
very active, we would have went to the gym,
camping, fishing, dancing, cycling and walking
the dogs etc. I was in a motorbike club and
involved in animal rescue, but I had to give it all
up. I was so physical; now I get up, deal with the
pets and then back into bed.
I don’t think people
understand the condition
unless they have it themselves
or knew me before I had it.
I don’t see a lot of my friends that I used to be in
contact with. I withdrew myself from socialising
and, because of that, I sort of got forgotten
about. Eventually people stop asking you to
go places as I would always say I have to see
how I feel on the day and sometimes it’s the
afternoon before I can let them know. I can’t
commit to anything and I constantly feel like I’m
letting people down. People stop asking as I
keep declining or can’t go. I don’t think people
understand the condition unless they have it
themselves or knew me before I had it. I think a
lot of my friends think that I’m making excuses.
I think my husband understands the pain, but I
don’t think he understands the fatigue side and
he gets a little frustrated. He was diagnosed
with muscle-wastage down one side and he also
gets very tired as well so we have both sort of
withdrawn from our social lives. We don’t go out
together anymore as it takes too much effort to
get ready, never mind go out, so we just stay in.
He sometimes goes out with friends or on his
own to family things and I will stay at home.
A hidden condition | Ten people living with fibromyalgia tell their story
33
Key issues and recommendations
Key issues
The stories in this report include a number of common themes and experiences. For many,
their journey for help and support started at primary care. Understanding their condition and
being diagnosed was important to them. GPs played a key role in this process, however a lack of
understanding and awareness of the condition sometimes contributed to delays in diagnosis.
Specialist services for fibromyalgia are not available in Northern Ireland. Typically, help and
support was provided by GPs, pain clinics and rheumatologists. Those who shared their stories
had variable experiences in the services available to them and the support offered. The most
positive experiences were reported by people who felt that those who provided help had a good
understanding of their condition and their needs.
The importance of good information and advice was a consistent theme emerging from the
experiences of the people that we talked to. This can not only help people to understand their
condition, but provide the knowledge of how they can manage to live with it. However, often
people reported that they needed to source information about fibromyalgia themselves, either
online or through support groups. Support groups were also reported as being a useful source of
advice on applying for benefits, such as Disability Living Allowance (DLA).
A wider lack of awareness among the public contributed to reported difficulties in living with
fibromyalgia. For many, it was described as a ‘hidden’ or ‘invisible’ illness which the wider public do
not recognise. For some, it was felt that the lack of awareness and recognition of the condition had
wider daily consequences, such as difficulties in applying for entitled benefits and allowances.
Recommendations
Recommendations have been developed based on consistent themes emerging from this report
and in guidance from service users on our steering group.
1. The recent scoping exercise by the Public Health Agency (PHA), which identified opportunities
to provide more effective care for patients living with chronic pain, should be reviewed in light
of the specific issues raised by people in this report. A needs assessment should be produced by
Health and Social Care commissioners to understand how many people live with fibromyalgia
and what services need to be developed for them. It should also identify a coordinated care
pathway to support people living with the condition.
2. Health and Social Care in Northern Ireland should recognise the lack of awareness of
fibromyalgia that exists across primary and secondary care. Education and training resources for
Health and Social Care professionals should be developed, guided by people who live with the
condition. These training resources should also be developed so that they can be used by other
public services staff who would benefit from an increased understanding of the condition.
34
A hidden condition | Ten people living with fibromyalgia tell their story
Appendix 1: Service provision for fibromyalgia in NI
Service Area
Service provision for fibromyalgia patients
Department of Health, Social
Services and Public Safety
►► Patients initially present with symptoms to their GP.
►► GPs will refer the patients on for appropriate investigations.
►► Once diagnosed, support and information is available to GPs
and patients from national organisations.
►► The HSC Board works closely with these organisations to
signpost patients to relevant advice and support.
►► Due to the diverse nature of fibromyalgia symptoms,
training in its recognition and management will occur in
a number of different specialties including rheumatology,
neurology, psychiatry, gastroenterology, endocrinology and
GP.
Health and Social Care Board
►► The Board and PHA have established a chronic pain forum
which is taking forward the recommendations from the PCC
report “The Painful Truth”.
Belfast HSC Trust
►► No response at time of publication.
Northern HSC Trust
►► There are no specific services for persons who have a
diagnosis of fibromyalgia.
►► A social work service is provided for those aged 18-65 who
have a physical or sensory disability that has a substantial
and long lasting effect on their ability to manage daily life.
►► The team will assess the person’s needs to see if they are
eligible. The service provides access to services at home,
day care opportunities, respite for the person and their carer,
and help to identify options for long term care. They can
also provide advice and counselling to help identify coping
mechanisms, manage the effects of the disability and refer to
other professionals/ organisations that could offer support.
Southern HSC Trust
►► There are no specific services for fibromyalgia.
►► Fibromyalgia patients are referred to the Physical Disability
Team.
►► There is no specific pathway but the normal Care Pathway
would apply i.e. assessment, discussion with the individual
and relevant carers about options and develop an agreed
care plan which would be implemented in partnership with
all stakeholders.
►► There are currently no plans for specific service development
for this group.
A hidden condition | Ten people living with fibromyalgia tell their story
35
36
Service Area
Service provision for fibromyalgia patients
South Eastern HSC Trust
►► There are currently no specific services for fibromyalgia.
►► GPs refer patients they suspect may have this condition
to a range of hospital specialties including rheumatology,
neurology and the pain clinic.
►► Consultants help patients manage their symptoms through
the use of medication or through referrals to psychology for
cognitive behavioural therapy or physiotherapy for exercise
classes. They may also refer to the Pain Service if required.
►► Current waiting times for initial GP referrals for routine
appointments are 40+ weeks depending, on the specialty.
Western HSC Trust
►► No dedicated fibromyalgia clinics or a dedicated Consultant
with a special interest in fibromyalgia, or a Specialist Nurse
►► Patients are referred to rheumatology consultants.
►► The services provided are limited to a diagnostic service, and
patients would be referred on, as appropriate, to a Pain Clinic
or physiotherapy.
►► Unaware if commissioners are planning to develop
fibromyalgia services.
A hidden condition | Ten people living with fibromyalgia tell their story
Appendix 2: Glossary of clinical terminology
Acupressure: Acupressure uses the fingers to gradually press key healing points, which releases
tension, increases circulation, reduces pain, and develops spirituality and vibrant health.35
Acupuncture: Acupuncture is a treatment in which fine needles are inserted at certain sites in
the body for therapeutic or preventative purposes. It is often seen as a form of complementary
or alternative medicine (CAM), although it is used in many NHS general practices, as well as the
majority of pain clinics and hospices in the UK.36
Amitriptyline: Amitriptyline is a tricyclic antidepressant. It affects chemicals in the brain that may
become unbalanced. Amitriptyline is used to treat symptoms of depression. It can also be used for
other purposes and is not specifically for depression.37
Chiropractor: Chiropractors use their hands to treat disorders of the bones, muscles and joints.
Chiropractors use a range of techniques, with an emphasis on manipulation of the spine. They may
also offer advice on diet, exercise and lifestyle, and rehabilitation programmes that involve exercises
to do in your own time.38
Cognitive behavioural therapy (CBT): Cognitive behavioural therapy (CBT) is a talking therapy that
can help manage problems by changing the way people think and behave. It is most commonly
used to treat anxiety and depression, but can be useful for other mental and physical health
problems.39
Hypermobility type: Generalised joint hypermobility that affects large (elbows, knees) and small
(fingers, toes) joints is evident in the Hypermobility Type. Recurring joint dislocations are common
occurrences. Certain joints, such as the shoulder, patella and temporomandibular joint dislocate
frequently. The skin is also more liable to bruising.40
Hypothyroidism: An underactive thyroid gland (hypothyroidism) is where your thyroid gland
doesn’t produce enough hormones. Common signs of an underactive thyroid are tiredness, weight
gain and feeling depressed. An underactive thyroid can often be successfully treated by taking daily
hormone tablets to replace the hormones your thyroid isn’t making.41
Hydrotherapy: Hydrotherapy is the use of water in the treatment of different conditions, including
arthritis and related rheumatic complaints. Hydrotherapy differs from swimming because it
involves special exercises that you do in a warm water pool (33-36 ºC) with the assistance of a
physiotherapist.42
Laughter yoga: A combination of deep yogic breathing and playful laughter exercises. It is usually
practiced in groups where you can make eye contact and connect with your sense of childlike fun.43
Lidocaine infusion: Lidocaine is a common anaesthetic (painkiller). The medicine is delivered by
intravenous (IV) infusion. It works by blocking pain receptors in the brain and spinal cord. This may
help decrease chronic pain, especially for patients with neuropathic pain.44
Lyrica: Lyrica (pregabalin) is an anti-epileptic drug, also called an anticonvulsant. It works by slowing
down impulses in the brain that cause seizures. Lyrica also affects chemicals in the brain that send
A hidden condition | Ten people living with fibromyalgia tell their story
37
pain signals across the nervous system. Lyrica is used to control seizures and to treat fibromyalgia.
It is also used to treat pain caused by nerve damage in people with diabetes (diabetic neuropathy),
herpes zoster (post-herpetic neuralgia, or neuropathic pain associated with spinal cord injury.45
Neurologist: A neurologist is a doctor who specialises in treating diseases of the nervous system
including the spinal cord and the brain.46
Osteopathy: Osteopathy is a way of detecting, treating and preventing health problems by moving,
stretching and massaging a person’s muscles and joints.47
Propranolol: Propranolol is used to treat tremors, angina (chest pain), hypertension (high blood
pressure), heart rhythm disorders, and other heart or circulatory conditions. It is also used to treat or
prevent heart attack, and to reduce the severity and frequency of migraine headaches.48
Rheumatologist: A rheumatologist has received further training in the diagnosis (detection) and
treatment of musculoskeletal disease and systemic autoimmune conditions commonly referred
to as rheumatic diseases. These diseases can affect the joints, muscles and bones causing pain,
swelling, stiffness and deformity.49
TENS: Transcutaneous electrical nerve stimulation (TENS) is a method of pain relief involving the
use of a mild electrical current. A TENS machine is a small, battery-operated device that has leads
connected to sticky pads called electrodes. These pads are attached directly to your skin. When the
machine is switched on, small electrical impulses are delivered to the affected area of your body,
which you feel as a tingling sensation. The electrical impulses can reduce the pain signals going to
the spinal cord and brain, which may help relieve pain and relax muscles.50
Tramadol: Tramadol is a narcotic-like pain reliever. Tramadol is used to treat moderate to severe
pain.51
Venlafaxine: Venlafaxine is an antidepressant which affects chemicals in the brain that may be
unbalanced in people with depression. It is used to treat major depressive disorder, anxiety, and
panic disorder.52
38
A hidden condition | Ten people living with fibromyalgia tell their story
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29. McVeigh JG, McGaughey H, Hall M, and Kane P. The effectiveness of hydrotherapy in the
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40
A hidden condition | Ten people living with fibromyalgia tell their story
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A hidden condition | Ten people living with fibromyalgia tell their story
41
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